The Next Generation of Problem Solvers Sharon F. Terry, MA President & CEO Genetic Alliance BIOVISION 24 March 2013

“You never change things by fighting existing reality. To change something, build a new model that makes the existing model obsolete.” Buckminster Fuller Systems book: Thinking in systems, Donella Meadows

Elizabeth and Ian diagnosed with pseudoxanthoma elasticum (PXE) Elizabeth: PXE International ED Ian: Webmaster

BioBank Gene Discovery Patenting Licensing & Intellectual Property Management Human Clinical Trials Drug Screening & Development Approaches Therapeutics --Small Molecules --Nonsense mutants Testing Clinical Diagnostic Test Development via FDA & CLIA Regulatory Strategies

There is no deli number…

Terry SF, Terry PF, Rauen K, Uitto J, Bercovitch L. Advocacy Organizations as Research Organizations: the PXE International example. Nature Reviews Genetics Feb; Vol. 8, No. 2 6

Network of more than 10,000 organizations, 1200 advocacy organizations (Founded 1986) Connected Consumers using Smart Services

Maturing Participation 1950s-1960s – Medical Models – Voluntary Health Organizations 1970s – Nascent Patient Movement – Missing Services – Self-organized Disease Specific Organizations 1980s – Maturing Patient Movement – IS & IT Technology – New Alliances and New Strategies Emerge 1990s – Powerful Momentum “Patient Power” – Websites & – Institutionalized Advocacy Coalitions – Patient Organized Networked Research Organizations – Effecting Broad Change of Public Policy 2000s – Successful Models “Research Advocacy” – BioBanks – Active Engagement in the Research Enterprise – Breaking Conventional Boundaries of the Medical Model – Demand for Quality, Services, Choice, & Personalized Delivery – Patient Rights Public Policy – Changing the Status-Quo 2010s – Smart Networks in the Commons – Translation & Delivery – Participatory, dynamic, long tail, precise

Culture Shift in Information Age Industrial Age (old) Information Age (new) Control means of production Open means of production Based on scarcity Based on abundance Hierarchical / Command & Control Network / Collaboration Linear / Sequential Organic Win / Lose Win / Win Materials Information

Citizen Science

Questions the Old (Current) Paradigm Answers How do we reward competition? How do we lock up knowledge? How do we protect our stuff? How do we sustain industry and academia? How do we sustain an ecosystem around that enterprise? How do we create diagnostics and therapies effectively?

Questions the New Paradigm Must Answer How do we incentivize this culture? How do we maximize collaboration? How do we capitalize on networks? How do we share information quickly and freely? How do we enable openness and transparency? How do we create diagnostics and therapies effectively?

People hold the keys, how about we also participate in solving the puzzles? Current fragmentation Redundant infrastructure Low power High costs Visionary leadership Shared infrastructure Higher power Lower costs Dirty data gets cleaner

Consumers Participants Drive Collection and Sharing Participants Drive Collection and Sharing Network effects for analysis and next gen Network effects for analysis and next gen This needs support: financial, tech solutions, leadership conversion

What do personal data collection tools look like in 2012? FitBit ® iPhone App Wireless Scale iPhone Twitter Facebook

23andWe

Private Access Privateaccess.com

Multi-stakeholder Engagement in Open Source Databases Patients Physicians Citizens Knowledge Experts NETWORK PLATFORM MedXChange/Synapse/Sage Bionetworks

Free the Data Rally a group of people to understand the power of putting their data in the commons - BRCA Portable Legal Consent Existing or new dataset into commons Significant population or condition Real world utility

DNA Warehousing – Newborn Screening February 4, 2010 It is the moral imperative of every person on the planet to freely share their health information. Paraphrase of Jamie Heywood, Co-founder, Patients Like Me "We were appalled when we found out. Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.” Karen Brown, Nurse, new mother, Florida

Change the Culture and Change the Paradigm Citizen’s have changed: Egypt, Syria, AIDs, breast cancer, injustice The computer, music, publishing, film industry Translational research: THAT’S MY DATA!and more

Incentives Change the culture to one of truth and openness Take risks that the people you serve take everyday Align incentives for researchers, clinicians and the public for research and clinical care setting agenda conferences Share data Find business models that support this Empower shared ‘full monty’ for all

Nothing about us without us. US Native American Activist This US is all of US.